defeat...

good god, never have i felt so humiliated in my life as i did last night. i'm not even sure why i'm writing it, other than that i want to remember it, and that it will most likely happen again, and somehow that makes documenting it worthwhile.

we were sitting in the living room, stean and i. just sitting there, not doing much of anything, and i started to feel so tired and out of it--i would go into stares in which my eyes would start to blur, and i would have to jar myself out of it. so i leaned my head forward and covered my eyes with my hands and then i started crying. not like a sad cry or an angry cry or even like a scared cry. it was as if i had to unleash something, get something out in the open. it was an ugly cry. it was as if the cry were having me. i cried and cried and cried. and i felt like i needed to get away from the room with stean and the dog and the cats so i got up--still crying--and walked toward the stairs. stean didn't move--he said something like, "i'll let you be--i know you need to go through this." i felt so weak and powerless and i tried to climb the stairs, but it turned into more of a crawl. and the tears were all over me and my nose was running all down my face and i felt like i needed to get away from everything.

i only made it to the landing on the second floor, so i curled up there and cried and cried and cried and cried, tears and snot everywhere, forming puddles on the ground. i kept saying over and over, "what do i do with this? what do i do with this?" i don't know if i was talking to god or myself or if these words were part of the crying that was possessing me. it was so surreal.

all of this has been surreal. or hyper-real. if i let myself think about it, it's as if i'm watching myself go through it--as if i'm in the corner of the room looking at me talking to people or reading about it or having a headache. seeing myself with multiple sclerosis from afar, because i can't do it yet from within. god, i don't know what's going on. a couple of months ago i felt that i had a path, a plan. i knew what was going to happen with my life, at least in the next few years. but that has all been taken away from me. i can't say for sure that i'll make it through the rest of may without taking any sick days, let alone be okay to wear an orange bridesmaid dress in amy's wedding in july or--sweet christ--start school in august.

i want to have babies and i want to have a happy career and i want to grow old. i want to do these things without assistance, without drugs. that is absolutely not possible anymore. i've been so heartachingly aware of the people i see who walk with canes or walkers or who are in wheelchairs, particularly if they're younger than the age that one would expect to see someone using those aids. all i see is myself. i see me in the wheelchair. i see me with the grocery bags tied to the front of my walker because my hands aren't free to carry them. i see me, compromised and incomplete; bionic and sick.

"what do i do with this?" over and over and over. my sobbing must have sounded so awful. from in my head it sounded hollow and discordant and unfamiliar. i was so ravaged with this fit, but i felt somehow detached from it. i was lying on the ground in the fetal position, my head soaked by the puddle it had created on the floor, staring at this rubbermaid box stean has with a bunch of odds and ends in it. not thinking about it, but staring at it. it was the only calm in the storm of noise and tears and snot and anguish streaming out of my body. but the calm felt that it was mine, while the torment belonged to someone else, something else. my body, maybe? or maybe to that girl who just got the multiple sclerosis diagnosis and who was told first of all that it was a brain tumor. that girl, emily. i don't know her. i don't know what to do with her.

i would calm down, catch my breath, try to rub some of the tear-puddle into the hardwood floor. i'd get a moment's rest, and then it would start up again. i don't even know what i was feeling. all i could think was about how much i wanted to scream. so finally, i did. and then, i got up, went into the bathroom and washed my face, and cleaned up the puddle.

it didn't pass that simply, of course. i went downstairs and collapsed into stean's arms and burst into tears again. and here i am, about twelve hours later, still reeling a little bit, and definitely embarrassed by the whole scene.

dave and i were talking the other night about why memoirs/autobiographies are worthwhile. the act of writing about oneself seems so amazingly selfish to me. i am under no delusions that this weblog exists for any reason greater than my own selfishness. dave, however, my MFA-trained writer-friend, and possibly my dearest friend, said that it has to do with creating a truth. people write about themselves because there is something about their experiences that is true.

i think back on what struck me most when this whole thing started 47 days ago. there were two things i needed more than anything else--to be able to talk without limits about what i was feeling and thinking and experiencing, and to have someone talk without limits to me who had been through what i was entering into.

those have been the hardest needs to satisfy so far. and so there you have it--i guess that's why people write memoirs. and why people read them. we live in a world that's so communal and yet so lonely. the difficult stuff, the stuff that throws a spotlight on our imperfect nature, doesn't have a manual. it's why the self-help industry has been so successful, but in all truth, nobody can tell us what specific steps we need to take and then all will be okay. we just have to realize that we don't know much of anything and then go through the hard stuff head-first and on our own. i think that loneliness is absolutely necessary--how else do we figure out what we're made of? but we need to hear those stories that tell us that other people came out on the other side okay. because we can't possibly handle our frailty and our loneliness without a little bit of hope.

(i now officially sound like an idiot. if i'm not careful, i'm going to start throwing around words like "self-actualization" and start using aromatherapy. so i'll stop for now. i've said enough.)

i may not know the answer to the question "what do i do with this?" for a long while, but hopefully someday i will.